My Symptoms,treatments & life since 2000
This post could be a long one! I think for my own benefit and those reading here it’s important i explain my symptoms so progress can be tracked.
To start I think it’s best to describe what Multiple Sclerosis is for anyone reading here who isn’t aware.
Multiple Sclerosis is a illness of the central nervous system. The central nervous system comprises of our brain and spinal cord. Multiple Sclerosis is classed as an auto-immune illness. An auto-immune illness is an illness where your own immune system attacks a part of your body. In Crohn’s disease for example the immune system attacks the gut. In MS the immune system attacks the myelin sheath. The myelin sheath is that protective sheath on the nerve pathways of our body. When the disease is active the myelin sheath becomes damaged in a nerve pathway and affects the body with varying symptoms. The first symptom of MS I got was optic neuritis. I had pain behind my eyeball and quite bad blurring in my right eye for six months.It was like looking through net curtains for siz months. Colour was totally washed out and everything was distorted. I was put on a course of oral steroids which didn’t make any difference apart from making me gain weight and get terribly moody. When you have optic neuritis it is the optic nerve that becomes damaged and inflamed. For most sight returns but for some it doesn’t and the disease becomes progressive with more symptoms that don’t get better but just slowly get worse. I am one of the luckier ones I guess as my MS seems to be of a Remitting / Relapsing nature with slow progression.
The conventional treatment for treating MS and many auto- immune diseases is to suppress the immune system to stop it attacking itself. Steroids are routinely given to suppress the immune system when you have a relapse. And in the last 10 years plus there have been varying drugs developed which treat the illness by suppressing / modulating the immune system. I was on avonex and copaxone at different times and they didn’t agree with me. I got awful side effects and overall i just felt so unhealthy. When I got a flu i got it terrible and frequent and ended up on antibiotics for a few different infections. I slowly felt that my health overall was just getting worse and I ended up looking for alternatives. I stumbled across the MSRC uk website, the DIRECT-MS diet website (both these are in my links section) and they interested me and so i changed my diet and dropped the injections on my own initiative after much reading and talking to others. After a few weeks I felt so different. This was in 2003. That heavy foggy feeling in my head lifted. My energy improved and alot of symptoms improved. I began to read and keep up to date on other alternatives online and then got an email from Mary Boyle Bradley in early 2004 about Low Dose Naltrexone. I spent quite a while reading about LDN because at first i thought it sounded like quackery. There is alot of quackery on the net and I needed to talk to quite a few people and read some facts before i was convinced LDN could possibly be of any benefit and have no harm to my health. I was eventually convinced and talked to Dr. Bob Lawrence ( a UK GP who has MS himself). Dr. Lawrence helped many people get LDN at the time and dedicated much time to helping those of us trying to get it. Dr. Bob posted me some LDN (imported from Skips Pharmacy in the US) and I started in April. At the time i still struggled with fatigue (although diet had improved it alot ) and i was prone to eye flares when overheating. I also had terrible muscle spasms in my upper back at times and was dealing with depression and anxiety on and off. I had paranthesia (mainly tingling and horrible feeling in my legs), this mainly affected me at night in bed. I also got terrible itching (Pruitis) in my legs when I overheated. I used got for weeks with my partner on the beach and after 5 mins of walking i used get terribly hot in my legs and itchy. As for my eyes they’d go cracked too after exercise/heat. This is known as Utthoff’s syndrome in MS. I noticed in a very short time on LDN ( about a week) that my fatigue definately got better. I felt good in general, just a good feeling and energetic. I was on holidays with my boyfriend in Cuba in May and tolerated 30 degree heat pretty well. We were on a beach resort with lots of breeze but i still tolerated the heat far better than i would prior to LDN. In June though when we got back from holidays and back to normality we got a huge shock of a surprise when we discovered i was pregnant. It was most definately not planned and was quite frightening when we saw the pregnancy result. To cut a long story short ( well a bit shorter 
)I stopped LDN at the time as i was afraid to take it in pregnancy as i couldn’t find a definate answer to whether it would be safe. Our daughter was born in Jan 2005 five weeks premature. Again another fright. All this pregnancy and impending parenting stuff was just frightening but it was probably far more frightening for our daughter ha 
I breastfed Ava from birth for two reasons. Firstly for her nutritional benefit. I was a very colicky baby and my partner didn’t tolerate cows milk too well so felt breastmilk would be best option. Also I had read some research about MS mums doing better post partum because the hormones don’t drop so fast and mums who breastfed seemed to have better chance of not relapsing because of this. also I thought about all the bottles, steriliser etc and thought surely making bottles , washing them and heating them etc would be so much work so breastfeeding it was! Our daughter spent her first week in neo-natal in the maternity hospital due to being premature and having some jaundice. She took to breastfeeding well. We got good support in neo-natal which really helped being a new mum. By the time she came home I was getting more confident feeding her and the jaundice had improved. I forgot to say that my MS symtpoms went completely in my third trimester of pregnancy. This can be quite common for many with MS. No symptoms returned till about 4 months post partum at which stage we were trying to get our daughter to take a little goats milk formula as i was getting quite exhausted and she wasn’t a good sleeper so we wanted to adjust the plan a little so that my partner could do some night feeds with formula. She took to the formula but I continued to breastfeed till she was 8 months. We slowly introduced a bottle for each day feed from six months and it worked nicely for both me and my daughter. i think also it slowly adjusted my hormones too but i think at the six month mark they really began to go potty I began to get anxious, depressed and looking back I think my PCOS began to go crazy at this point. The ugly side effect of excess body and facial hair began to get worse and I began to pile on the weight. I also began to get bowel spasms which were quite frightening. Also the fatigue was back and I trulily had forgotten how hard it is to cope and manage with MS fatigue. It’s one of those symptoms which is so hard to explain to those without MS. I remember before I had MS getting tired but with MS Fatigue it is totally different. My brain goes numb, cognitively it’s difficult to function and concentrate and physically with fatigue my body gets very heavy. It’s like you are carrying extra weight.
From this point in autumn 2005 till now summer 2009 I have dealt with what i describe as a slow progression of all my health. I have dealt with some difficult depression at times too which has made it impossible to deal with all the others stuff. I was on SSRI’s twice since my daughter was born as i had got so low i knew i needed them. I have become quite aware of my body the last 10 years so it was one of those points i knew what i had to do. Both times on SSRI’s i hated the feeling. Firstly they made me more anxious and depressed the first few weeks and then i got a worse fatigue that i already had and then i started piling on weight. Not really a good solution as i still ended up going to counselling which at the end of the day got to the bottom of my thoughts and emotions better. There was no magic solution though. I reckon with already having PCOS, a history of depression and with exhaustion from parenting it just took time to become more mentally stronger. My daughter went to preschool last September and I think gradually since then things have improved alot. Since early this year i started a gym class I have been looking for, for quite sometime. Our MS Society started a great program called ” Getting the Balance right”! I will admit to being annoyed with the MS Society in the past as always felt they could be doing more and I think when I discovered Low Dose Naltrexone in 2004 it really frustrated me that the MS Society would not help to give information out or to help get trials. I discovered they were funded alot by the pharma companies and this may be the reason. But now I realise LDN or not they still do a good job and many of the people working behind the scenes do quite alot to help people with MS on a daily basis. There was big fundraising done here last year at Tesco food store. Tesco fundraises for a charity a year and last year they raised alot for the MS Society. It was this money which was used for the Exercise program. There was a physio class, a yoga one and a gym one. I did the Physio class sessions in 2008 and this year the gym ones. Both have been beneifical and I think the MS Society did a super job organising all this. I think there are many people out there who can help us with MS. I’m not sure who really can help get LDN into the health system better now though but i think alot has been conquered the last few years since the word started getting around.
My anxiety and depression is so much better now. The anxiety is there the last few weeks but not as bad as before. I find once i’m stricter with coffee and diet it is not as bad and often disappears. MS wise fatigue is the big one i have to deal with daily. Some days i have good energy but on average it’s probably a 5 out of 10. Some days i am so heavy with fatigue everything is an effort and it’s hard not to get grumpy and frustrated with it but i think now that i’m dealing with it nine years i’ve found ways around it better. On bad days i just have to reserve it better as i go through the day. I often go back to bed when my daughter is in preschool in the mornings and then i am more functional when she gets home. On good days though i can manage to do things in the morning as well as all afternoon with my daughter till my partner gets home from work. On these good days I tend to get wired with excitement because of feeling good energy wise. Sometimes I can stupidly over do it as I love to catch up on things when I have the energy. I usually wither away then in the evenings by 6 o clock and just need to put my feet up. Much time has been spent online in the evenings as i don’t have energy for much else. I am trying to get rid of this habit now and do other things or at least find other things when i’m really tired or even just to go to bed and sleep! I come from a family of night owls and It’s been terribly hard disciplinging myself to actually go to bed when I need it When I am online I think that blogging will hopefully be a new therapeutic treatment for me when I am instead of spending pointless time facebooking and the like.
My PCOS has been hard to keep tabs on especially since my daughter was born. Weight is harder to manage now but i am just 2 pounds more than prior to pregnancy a few years back but that’s with constant work watching things. I am hoping to loose quite alot of weight as from my own research it should stop the PCOS progression and it’s so important i do that to avoid cancer, heart disease and diabetes which many PCOS women end up getting. The excess hair is the worse symptom I find hard to deal with. I have got stronger though and try not leave it bother me as much. It takes quie alot of maintenance but am doing all i can to deal with it. Sometimes people can be cruel and sometimes I can be far too sensitive!
I have had awful tingling legs last few months. I think i flared a bit in January and i think i’m flaring a bit again the last few weeks as same symptoms. These are anxiety out of no where, fatigue, tingling in legs and feet and a horrible pain in my heels of feet which makes it feel like I’m walking on pebbles at times. I am continously changing my shoes and end up putting on my runners for comfort and even they don’t feel as comfortable at times lately. I had horrible spasms in my hands a few months back but I’ve found a cure! Well at least i think so anyway. The gym has fixed it! When I used lift things at times(regardlessof the weight) i used get a shooting pain across the fore of my hands. It was a feeling like the muscles would tighten and stay in pain ! I used get it a few times a day and nearly scream with it. I haven’t had it in weeks and really feel building up strength or just general exercise improved it slowly and got rid of it. The exercise i learned in the gym also gives me an increase in energy too. At first though it made me so tired. It was really really tough. I’d have the class on Thursday mornings while my daughter was in preschool. The class was an hour long. When i’d get home i’d shower and eat something healthy. Then about another hour later i could feel the tiredness come on. It was like the gym used all my energy and for the rest of the day it was so difficult!! Within a few weeks it got easier and then it got to the stage after a few months that I didn’t have that tiredness at all the same day after the gym. I’d get a good sleep that night and the following day i’d have a good day energy wise. So after a few months i saw that it slowly increased my energy. Research studies have shown this with MS and Fatigue too but it made much more sense and gave me much more motivation when I actually experienced it.
Besides all that Life is good You all probably think I’m geriatric but honestly I’m not. Actually I’m one of many people with MS who you’d look at going down the street and not think there were anything wrong with me. While this is good that i’m fully mobile it can be frustrating as people have little empathy. Alof of people in my life really don’t understand it and I find it best to keep things to myself as people get uncomfortable and think you are just moaning. Also there comes a point you just feel you don’t want to talk about it and live a normal life. So for the most part i try desperately to try forget about it and get on with things. I am hoping LDN and back to diet better may improve things more so that I really can forget about my health problems more. I would like to work outside the home a little bit again and i know many of us with MS struggle with keeping emplyment but I know it’s possible and I aim to get there. I’m not sure yet what I will get back to studying or working at. I have a few interests and then there are many sides of me that has changed since i got diagnosed with health problems that has made me feel like a complete change. I am not career driven or very ambitious. I think MS alone changed my view on all that. I am more a person who works to pay the bills then to live to work sort of way. Anyway i’ve lots of dreaming to do…no actually I had enough of that earlier in the week with my LDN vivid dreams haha anyway who knows. If I get healthy and make a fortune I will fund the LDN trial. I wonder which is more possible. I think they are all possible. I hope so anyway
Off now to put my little maggot to bed. I’ve promised her two long stories tonight. She loves reading and she’s now getting cute trying to get more stories out of us so she can stay awake longer
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